Posts
Wow, can it be that the first month of 2010 is already nearly over?? Unreal. I have a few minutes just to post an update on what's happening with Lilly's medical care, and hopefully tomorrow or sometime soon I can post some recent photos!
We had initial consultations with Dr. Robert Campbell at Children's Hospital of Philadelphia (CHOP) over the holidays while we were in New Jersey visiting Tom's family. Dr. Campbell is one of the pediatric orthopedic surgeons at CHOP, and he is the developer of the VEPTR implant, which stands for "Vertical Expandable Prosthetic Titanium Rib" The VEPTR is the most recent breakthrough in congenital scoliosis treatments in young children with chest wall deformities, and the first child ever to receive a VEPTR is now nearly 20 years old. If you are really interested in knowing more about this device, feel free to check it out here: http://www.veptr.com/wiki/History%20of%20the%20device.ashx
We were thoroughly impressed with Dr. Campbell, not just with his background and his knowledge, but his willingness to take much time with us during our visit, answer all of our questions, and his ability to connect with Lilly were impressive. As I suspected, he immediately said that Lilly is a candidate for the VEPTR, and ordered followup images--CT Scans and MRIs, including a dynamic lung function test--to see exactly what is going on orthopedically in her spine and ribs, to see whether her spinal cord is tethered in any way to her vertebrae, and to see to what extent she has thoracic insufficiency syndrome (a fancy way to say that her breathing is compromised by her shape). While we were in the area, we also had some additional x-rays taken (Lilly hates x-rays, no matter how many times we talk about Curious George smiling while getting x-rays and it not hurting) and we met with the General Surgeon, who will be a part of the surgical team.
So we left our appointments in December feeling good about the doctors, the staff and facilities at CHOP, and the proximity to Tom's family for support. Praising God for research and development and technology that will allow Lilly to be straight and to grow and, Lord willing, to live a long and healthy life, despite a congenital condition which--if left untreated--would almost certainly have threatened her life at a premature age. But we also left feeling a little bit out of breath and looking ahead at what is likely to be a long road for Lilly and the rest of us.
On Thursday of this week, Lilly and I will head back to Philly to meet with the pediatric pulmonologist (another member of the surgical team) and go to pre-op for her upcoming CT and MRI scans. We will make a separate trip late in February for her to undergo general anaesthesia to have her scans done. Once they have all of the images they need, the surgical team will meet to review her case and discuss specifically what they will need to do surgically and what the recommended timeline for surgery will be. Until then, we will stay tuned and be grateful for whatever down time they feel we can enjoy before we embark on this journey.
Once the initial surgery is done (which is a major surgery with a fairly lengthy recovery, from what I understand), we will make return visits every 6-9 months to have her VEPTRs expanded as she grows. This will continue until she is done growing, in her teen years.
Thanks for your prayers for us as we travel this week, and for the surgical team and medical staff at CHOP as they make decisions and care for Lilly.
Stay tuned for more photos from the holidays, Jared's recent 13th birthday (YIKES!!) and daily life in the Cantilina household!
